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Speak, don’t hold your peace

EXPORTING genetic know-how to a regime that sanctions eugenics is about as morally wholesome as selling Semtex to countries that sanction terrorism. Yet this uncomfortable idea seems to have bypassed some people.

On 1 June 1995, a law came into effect in China forbidding couples diagnosed as having genetic diseases from marrying unless they agree to be sterilised or to take “long-term contraceptive measures”. Many Western geneticists have rightly protested against this chilling move, though some are still agonising over whether to boycott a major meeting on genetics to be held in Beijing in 1998.

Equivocation is not something one could accuse Genset of. This French company, which specialises in collecting and sequencing human DNA, looks certain to be there in 1998. It has struck a deal with the Beijing regime to collect and analyse DNA samples from all over China (This Week, p 4).

Medical research as pure as the driven snow is how the company is presenting it. French scientists will not test Chinese couples for bad genes or participate in any other questionable programme to genetically screen China’s population. Instead, they will analyse anonymously donated DNA samples looking for genes linked to common diseases.

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The Chinese have as much right as anyone else to reap the medical rewards of molecular genetics. And there can be no doubt that the search for new therapies, not eugenics, is what motivates the French scientists. But in the long run, that is neither here nor there. The Chinese government might still attempt to use the knowledge to identify genetically “unfit” couples and fetuses. It might not do so for years, or even decades, but that relieves nobody of their moral responsibility to act now to make the regime repeal its law. China badly wants expertise in human genetics, so companies like Genset have something to bargain with. That lever vanishes if the technology is handed over unconditionally.

Most Chinese geneticists seem (as far as anyone can tell) to oppose the new law. Its proponents say it only permits practices which are already common in the West. If the law merely provided people with genetic tests, that would be true. But it doesn’t. If a prenatal test detects a “serious genetic disease”, Chinese doctors are required to recommend an abortion. What “serious” means here is anybody’s guess. The cynical view is that it might just mean Tibetan.

Some might say that China is a special case because it faces immense population problems. It does, but eugenics is no more acceptable because of them. Nor would it necessarily solve the population problems&colon; people will always find ways round such laws.

Others might think it a bit rich for China’s critics to raise the alarm when, technologically, the scope for abuse is far greater in the West. True, Western democracies have been woefully inept at preventing genetic discrimination by, say, insurance companies or employers. Meanwhile, more and more people in families affected by breast cancer, cystic fibrosis, Huntington’s and other diseases are having genetic tests. Before long, the West is going to have to do something about genetic privacy.

What is happening in China should help to concentrate minds. But it raises a new question as well&colon; do Western democracies need to regulate exports of genetic expertise as well as arms sales?